In hindsight I can say that this was the calm before the storm. At the time all hell broke loose. Waiting for open heart surgery is so stressful. Our emotional stay was in anxiety panic mode. Jesse was calm, quiet and blue.
Friday, November 12, 2010
Jesse's cardiac health started to fail when he was 2 and a half. We noticed he sweated profusely day and night. He was struggling with his mobility both because of his chd, physical disability, lack of diagnosis of cerebral palsy and no early intervention services. He was increasingly blue and breathless. Late one night I could hear him coughing and when I went into him he was very cyanosed so I call an ambulance and he was admitted to two hospitals that night and assessed to be in cogestive heart failure. He was listed for the nextstage of his right ventricle overhaul.
In hindsight I can say that this was the calm before the storm. At the time all hell broke loose. Waiting for open heart surgery is so stressful. Our emotional stay was in anxiety panic mode. Jesse was calm, quiet and blue.
In hindsight I can say that this was the calm before the storm. At the time all hell broke loose. Waiting for open heart surgery is so stressful. Our emotional stay was in anxiety panic mode. Jesse was calm, quiet and blue.
Time to meet another member of the four surname family. Jesse's foster dad C is the gorgeous dad in the photos. I met him in the USA and he travel to live in Australia. We fostered Jesse and although initially unsure about living with a child with a chd he became a besotted dad in a very short time. Here is a photos of their first bonding session.
Thursday, November 11, 2010
The beginning of the wild child
With intensive early intervention using the Hawaii Early Learning Programme (HELP) I work on Jesse's gross, fine motor, expressive and receptive communication, cognitive, and self help skills. Using the HELP workbook I programmed each day with activities to teach him developmental skills. He gradually began to make gains in his development. The most significant delay at that stage was his physical development. He had a right side hemiplegia with his right leg and foot most effected by the cerebral palsy and he struggle to weight bare, sit, crawl and to finally walk. Jesse's fine motor was very delayed. He had poor balance and would topple when he reached across the midline on his body.
I needed to go back to work and had to place Jesse into child care. Almost immediately it was observed by the centre that Jesse need one to one due to his global developmental delay and behavioural difficulties. There were numerous safety issues in the home, child care and in the community. Once he started walking independently he became increasingly difficulty to manage with risky behaviours and frequent temper tantrums if unable to do what he wanted although a behavioural norm his behaviour put other children at risk of injury.
We attended the Infant Health Service and he was graduated from this service with no skills development or at home therapy ideas or assistance. He was referred to Children's hospital physiotherapy and occupational therapy service but suspend at the age of 3 due to his challenging behaviour. We were referred to the Psychology department of the hospital but this never referral never produced an appointment despite frequent follow up by me. This was an early taste of what was to be a frequent pattern in the inability to access services.
I made numerous attempts to find services and have assistance with his physical disability. He had significant problems with his right foot and leg resulting in many falls. Finally after giving up on the infant help and children's hospital I self referred to the Cerebral Palsy Association where we final started to get the help we were needing.
Thursday, February 05, 2009
Early Intervention and Brain Plasticity
Jesse's developmental delay was thought to have been caused by a brain injury when he had the modified blalock shunt at 2 days of age. Much later we found the he had congenital toxoplasmosis. Here is a link to explain the condition
http://www.nlm.nih.gov/medlineplus/ency/article/001360.htm
The hospital Jesse was born at was testing for this condition and with early treatment some of the effects can be minimized. But due to his chd he was transferred to the pediatric hospital and wasn't tested. Jesse biological mother has an intellectual disability and his father a learning disability, adhd and schizophrenia.
I worked each day with Jesse in the first three years. Using the HELP (my bible and coffee table book in those years) from Birth to Three I worked on all skills areas - gross and fine motor, expressive and receptive language skills, cognitive and self help. He was referred to the State Child Development Centre with very poor assessment and follow up and was discharged at 14 months unable to stand, barely sit and not crawling. With my intensive support little by little he made gains.
Just recently I read Norman Doidge's book "The Brain That Changes Itself". This book should convince any parent of a child with special needs the importance of working toward developing new skills.
Early intervention draw new neural pathways in Jesse's brain. He gained good use of his right arm and hand and improved function of his right leg. His muscle tone improved. He was motivated to learn new skills. Toxoplasmosis causes calcified deposits in the brain so some damage couldn't be undone but without the intensive support he would have been far more disabled.
http://www.nlm.nih.gov/medlineplus/ency/article/001360.htm
The hospital Jesse was born at was testing for this condition and with early treatment some of the effects can be minimized. But due to his chd he was transferred to the pediatric hospital and wasn't tested. Jesse biological mother has an intellectual disability and his father a learning disability, adhd and schizophrenia.
I worked each day with Jesse in the first three years. Using the HELP (my bible and coffee table book in those years) from Birth to Three I worked on all skills areas - gross and fine motor, expressive and receptive language skills, cognitive and self help. He was referred to the State Child Development Centre with very poor assessment and follow up and was discharged at 14 months unable to stand, barely sit and not crawling. With my intensive support little by little he made gains.
Just recently I read Norman Doidge's book "The Brain That Changes Itself". This book should convince any parent of a child with special needs the importance of working toward developing new skills.
Early intervention draw new neural pathways in Jesse's brain. He gained good use of his right arm and hand and improved function of his right leg. His muscle tone improved. He was motivated to learn new skills. Toxoplasmosis causes calcified deposits in the brain so some damage couldn't be undone but without the intensive support he would have been far more disabled.
Wednesday, February 04, 2009
Developmental Delay
The next part of our journey was working with Jesse's developmental delay. Just prior to Jesse being placed in our care I worked in early intervention with children with disabilities. I contracted to work in child care services with children as young as 6 weeks old who had special needs. Using HELP ( Hawaii Early Learning Program) http://www.vort.com/products/help_overview.html
I would work with children with special needs in the areas of gross motor, fine motor, expressive and receptive communication,cognitive and self help skills. This experience and resource gave me resource to develop Jesse's skills. He didn't have a "normal" childhood. I programmed each day to work on the skills he was delay in.
I would work with children with special needs in the areas of gross motor, fine motor, expressive and receptive communication,cognitive and self help skills. This experience and resource gave me resource to develop Jesse's skills. He didn't have a "normal" childhood. I programmed each day to work on the skills he was delay in.
Right Side Overhaul Number One
Jesse was in congestive heart failure from the time he was put in our care until he had his heart repaired. As with most heart babies he had feeding difficulties and struggled to suck his bottle. The exertion tired him and he would sweat profusely. I would have to place a towel under him to absorb the moisture he would produce. He was developmentally delayed and was followed by the neonatal psychologist until he was 5 years old. He was fortunate he was placed in my care as this delay did not trouble me and I embraced the challenge and set to providing early intervention that I will post about as I go along.
At this stage his heart condition was of primary concern. Here is a link to explain the condition.
http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3543
Because of this he was checked frequently by his cardiologist. In hindsight I was so besotted with my boy and had become compliance. We went from weekly to fortnightly appointments and I still had the view he would not need surgery until he was 4 years old. Jesse was a blue baby. His lips and around his mouth showed
What a shock I had when at what I thought was another routine turned into a medical emergency. His cardiologist found his liver was enlarged meaning the blood from his heart was back flowing into his liver. He need surgery immediately and because of the complexity of his condition he need to be flown to Royal Children's Hospital in Melbourne. This involved us flying from the west coast of Australia to Melbourne. Within 15 mins of walking into a regular appointment we were scheduled for flight across the country and major surgery 2 days later.
Traumatized and distraught I made contact with our local support group HeartKids WA. This wonderful support group informed me about what I needed to take and gave me invaluable information about what would happen. I remain very grateful for their support over the years.
On the day of our departure Jesse woke with a cough, snotty nose and temperature. Still distraught I phoned his cardiologist and had to rush him into his clinic only to be told he was too unwell for surgery and that it would have to postponed and was rescheduled two week ahead.
It was a long two weeks. Knowing that your child's heart is a time bomb doesn't help a parent's anxiety levels. Again I was grateful the counsel from lovely Tania from Heartkids. She supported me during this trying time. Tania was to die prematurely from breast cancer.
Once in Melbourne my anxiety escalated. His surgeon the talented Mr Mee explained that he didn't know whether Jesse would have a palliative or full repair. Because his right ventricle was hypoplastic he didn't know if it was viable and wouldn't make that decision until Jesse was in surgery.
Waiting for a child in surgery is tough. Chandy and I went walking. We didn't know Melbourne and walked with our anxiety. We stopped for something to eat although neither of us ate much. We had some alcohol and a little tipsy we headed back to the hospital. We got lost on the way back and had to get a taxi back. Once back at the hospital we had a very long four hour wait as surgery progressed. Final we had the call that he was out of surgery and in PICU. We had been taken for a tour of the intensive care unit the day before and I knew immediately he was doing OK as he wasn't requiring a lot of support. Again I was lulled into a false sense of Okness. I went out to phone Tania, family and friends. Chandy stayed with Jesse. While I was calling Jesse had some sort of crisis with alarms and whole support time dash in and Chandy escorted out. Fortunately it was a bit of a blip and we where allowed back in when he was stabilized.
Jesse made a rapid recovery from his cardiac surgery. Mr Mee had done extensive repair of his heart. He had found that Jesse's right ventricle was of borderline size and perform a full repair. This involved a right ventricle muscle resection ( imagine scooping out the flesh of a coconut to make a larger area). He had a second pulmonary valvotomy, a transannular patch (this was described to me as a patch across the hole in his atrium that was like a cat door that would open and close depend on the pressures in his heart) and an atrial septectomy when a hole was created to allow free shunting of blood between the two atriums.Jesse's journey and my anxiety wasn't over yet. He was only in PICU for 12 hours before being move to the high dependency unit. Once there he was found to have a blood clot in his left leg. As he had a significant right side hemiplegia the loss of function of his other leg would have further disabled him. He was scheduled for surgery to remove the blood clot. The surgeon described the surgery as going down an artery the size of a match stick to remove the clot.
Jesse recovered well from this surgery and five days after major cardiac surgery we were headed home to the west coast to recover and move on from his first right side overhaul.
At this stage his heart condition was of primary concern. Here is a link to explain the condition.
http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3543
Because of this he was checked frequently by his cardiologist. In hindsight I was so besotted with my boy and had become compliance. We went from weekly to fortnightly appointments and I still had the view he would not need surgery until he was 4 years old. Jesse was a blue baby. His lips and around his mouth showed
What a shock I had when at what I thought was another routine turned into a medical emergency. His cardiologist found his liver was enlarged meaning the blood from his heart was back flowing into his liver. He need surgery immediately and because of the complexity of his condition he need to be flown to Royal Children's Hospital in Melbourne. This involved us flying from the west coast of Australia to Melbourne. Within 15 mins of walking into a regular appointment we were scheduled for flight across the country and major surgery 2 days later.
Traumatized and distraught I made contact with our local support group HeartKids WA. This wonderful support group informed me about what I needed to take and gave me invaluable information about what would happen. I remain very grateful for their support over the years.
On the day of our departure Jesse woke with a cough, snotty nose and temperature. Still distraught I phoned his cardiologist and had to rush him into his clinic only to be told he was too unwell for surgery and that it would have to postponed and was rescheduled two week ahead.
It was a long two weeks. Knowing that your child's heart is a time bomb doesn't help a parent's anxiety levels. Again I was grateful the counsel from lovely Tania from Heartkids. She supported me during this trying time. Tania was to die prematurely from breast cancer.
Once in Melbourne my anxiety escalated. His surgeon the talented Mr Mee explained that he didn't know whether Jesse would have a palliative or full repair. Because his right ventricle was hypoplastic he didn't know if it was viable and wouldn't make that decision until Jesse was in surgery.
Waiting for a child in surgery is tough. Chandy and I went walking. We didn't know Melbourne and walked with our anxiety. We stopped for something to eat although neither of us ate much. We had some alcohol and a little tipsy we headed back to the hospital. We got lost on the way back and had to get a taxi back. Once back at the hospital we had a very long four hour wait as surgery progressed. Final we had the call that he was out of surgery and in PICU. We had been taken for a tour of the intensive care unit the day before and I knew immediately he was doing OK as he wasn't requiring a lot of support. Again I was lulled into a false sense of Okness. I went out to phone Tania, family and friends. Chandy stayed with Jesse. While I was calling Jesse had some sort of crisis with alarms and whole support time dash in and Chandy escorted out. Fortunately it was a bit of a blip and we where allowed back in when he was stabilized.
Jesse made a rapid recovery from his cardiac surgery. Mr Mee had done extensive repair of his heart. He had found that Jesse's right ventricle was of borderline size and perform a full repair. This involved a right ventricle muscle resection ( imagine scooping out the flesh of a coconut to make a larger area). He had a second pulmonary valvotomy, a transannular patch (this was described to me as a patch across the hole in his atrium that was like a cat door that would open and close depend on the pressures in his heart) and an atrial septectomy when a hole was created to allow free shunting of blood between the two atriums.Jesse's journey and my anxiety wasn't over yet. He was only in PICU for 12 hours before being move to the high dependency unit. Once there he was found to have a blood clot in his left leg. As he had a significant right side hemiplegia the loss of function of his other leg would have further disabled him. He was scheduled for surgery to remove the blood clot. The surgeon described the surgery as going down an artery the size of a match stick to remove the clot.
Jesse recovered well from this surgery and five days after major cardiac surgery we were headed home to the west coast to recover and move on from his first right side overhaul.
Saturday, November 01, 2008
Cerebral Palsy
On the day Jesse arrived I noticed that he was not using his right arm and hand. I hadn't been told that he had a problem with this but as I had for many year worked in early intervention I recognised he probably had a right side hemiplegia.
The day he arrived it was very hot over 40 degree Celsius. He arrived along with all his equipment which all needed to be unpack and sterilised. He was 4 months old and in congestive heart failure.
He struggled to feed taking 10 -15 mls at any feed. He would sweat profusely and had extreme difficulty breathing. I was very concerned about his right arm and hand in particular that day. I took him straight to A & E for assessment on the first day. I had been told by his paedatrican that he would need cardiac surgery when he was 4 years old and that for the first year he was at high risk of sudden infant death. So wasn't so concerned at that stage with his heart condition. I had worked with David and felt comfortable with cyonotic conditions.
His right arm and leg I thought might have been a result of abuse or neglect. The A& E doctor was very suspicious of me and thought I had abuse the child even though he had been in my care less than 4 hours. He was discharged with no diagnosis and with me feeling annoyed that I had been considered a child abuser.
It wasn't until he was 3 years and 3 months that a doctor finally recognised that he had cerebral palsy. But nuch had happened in those intervening years.
The day he arrived it was very hot over 40 degree Celsius. He arrived along with all his equipment which all needed to be unpack and sterilised. He was 4 months old and in congestive heart failure.
He struggled to feed taking 10 -15 mls at any feed. He would sweat profusely and had extreme difficulty breathing. I was very concerned about his right arm and hand in particular that day. I took him straight to A & E for assessment on the first day. I had been told by his paedatrican that he would need cardiac surgery when he was 4 years old and that for the first year he was at high risk of sudden infant death. So wasn't so concerned at that stage with his heart condition. I had worked with David and felt comfortable with cyonotic conditions.
His right arm and leg I thought might have been a result of abuse or neglect. The A& E doctor was very suspicious of me and thought I had abuse the child even though he had been in my care less than 4 hours. He was discharged with no diagnosis and with me feeling annoyed that I had been considered a child abuser.
It wasn't until he was 3 years and 3 months that a doctor finally recognised that he had cerebral palsy. But nuch had happened in those intervening years.
Congenital Hearts
I first entered the world of congenital hearts when working with David. He was a child with Downs Syndrome and an inoperable heart condition. He was such a beautiful soul. I worked with David for may years as he lived way past his expected life expectancy. He loved music and dancing. The latter he tried to do but he couldn't manage for long. He would turn a deep shade of purple so he got his enjoyment watching others. I escorted David to hospital many times as his condition deteriorated. Each time was such a trauma for him.I admired his love of life and valiant attempts to participate in all he could. Love him I tried to ease his fear and hold his hand as his passing time came closer. I was sad but relieved when he finally passed as I knew he wouldn't suffer any more.
Several years later became a foster parent. I was unable to have children and really enjoy their company. I longed to be a mum and ache to hold a child in my arms. I had love to spare.
I met Jesse before he was put into my care. He was a beautiful 6 week old baby with the most amazing blue eyes. His parents both had disabilities and used to attend a group I was facilitating.
Jesse has a very complex range of conditions. Today I'm just going to post about his heart condition. His congenital heart condition is called pulmonary atresia with an intact ventricle septrum, hypoplastic right ventricle, atrial septral defect, tricuspid valve incompetence and patent foramen ovale. This condition is very complex and life threatening. Jesse had surgery when he was 2 days old to put in a modified blalock shun and pulmonary valvotomy. This shunt allowed blood to flow to his lungs to be oxygenised and began the process of recreating his pulmonary valve and saved his life.
Jesse was 4 months old when he put into my care. Here is a picture of him of the day he arrived.
Several years later became a foster parent. I was unable to have children and really enjoy their company. I longed to be a mum and ache to hold a child in my arms. I had love to spare.
I met Jesse before he was put into my care. He was a beautiful 6 week old baby with the most amazing blue eyes. His parents both had disabilities and used to attend a group I was facilitating.
Jesse has a very complex range of conditions. Today I'm just going to post about his heart condition. His congenital heart condition is called pulmonary atresia with an intact ventricle septrum, hypoplastic right ventricle, atrial septral defect, tricuspid valve incompetence and patent foramen ovale. This condition is very complex and life threatening. Jesse had surgery when he was 2 days old to put in a modified blalock shun and pulmonary valvotomy. This shunt allowed blood to flow to his lungs to be oxygenised and began the process of recreating his pulmonary valve and saved his life.
Jesse was 4 months old when he put into my care. Here is a picture of him of the day he arrived.
Tuesday, September 30, 2008
Long Time Between Posts
10 Months since I have posted. Mother Shrek suggested I write a blog so thought I would give writing another go. Life has been pretty crazy managing family and working.
Friday, November 23, 2007
Proud Mummy Moment
Jesse did a wonderful colourful painting at DADAAWA over the semester and it went on exhibition this week. Lots of different greens and strong images of people. We went in today and found that it had sold. Jesse is so pleased and this event will aid in motivating him to continue to pursue art as an interest and maybe in the future a career. He is such a creative young man and it is so empowering for him to achieve like this. People with disabilities often have such negative experiences in their lives with so many barriers to overcome.
Jesse did a wonderful colourful painting at DADAAWA over the semester and it went on exhibition this week. Lots of different greens and strong images of people. We went in today and found that it had sold. Jesse is so pleased and this event will aid in motivating him to continue to pursue art as an interest and maybe in the future a career. He is such a creative young man and it is so empowering for him to achieve like this. People with disabilities often have such negative experiences in their lives with so many barriers to overcome.
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